Courage for Kennedy – Journal


April 1, 2006

I Finally Got Mad Enough!

Category: General,Treatment – Melenie – 11:23 pm

Well, it is time to bring the hammer down on PPC. If you are new to this journal let me fill you in on the agony that is called Primary PhysicanCare.

As many of you know, at the time of Kennedy’s diagnosis Keith was self-employed, I was a full time student and we had no health insurance. We felt it was just too expensive (for the kids alone it was almost $500/month) and we were able to pay cash for the usual doctor and dentist visits. Obviously, cancer can blow all theory out of the water and we were now looking at over $1 million dollars in medical expenses. Keith was able to secure a fantastic driving job through the Portland Sunbelt Rentals at what he was making working for himself with full benefits. He jumped on it and we thought our health insurance problem was over…it had only begun.

Kennedy received Oregon Health Plan (medicaid) from the day of her diagnosis until November 30, 2005 and they paid for virtually everything, minus a few prescriptions but that was easy to iron out with a few phone calls by her oncologist. We began billing PPC when her OHP ran up and were originally told that ALL was a pre-existing condition that would not be covered until 9/06. They apparently reviewed the situation and decided that they would begin coverage on 5/06. Our oncologist called our case manager, Robbin, and told her that is was not a pre-existing condition by definition because she could not have had it for 12 months prior to enrollment…she would be dead if that was the case. Acute=not pre-existing! Ok, first problem solved. Then, they decided that because she is on a research protocol they would not pay a single dime for treatment or for any complications arising from treatment…no matter what, and they have stuck to their guns. In January, they called to inform us that if we pull Kennedy off of treatment, regardless of the fact that her treatment would not change, then and only then would they pay anything. There is a big problem with that…let me explain. It is vital not only to Kennedy’s health and well being but to the future of children’s cancer research that she remain on the Children’s Oncology Group study. The Children’s Oncology Group is one of the premier children’s cancer research groups in the world and their input is absolutely crucial to Kennedy’s outcome. Please understand that Kennedy has a very unique case due to her high-risk, slow-response status and the rare complications she has endured (such as DIC and VOD-for more information please read entries beginning the middle of December). By her remaining on study, we are able to consult with pediatric oncologists at many of the top treatment facilities at no cost and with Kennedy in their database, children with her complications will benefit from the case study being written regarding her care. The research chair has even presented aspects of Kennedy’s case in Washington, DC to the National Institute of Health. Primary PhysicianCare is railroading and manipulating us in to making unsafe decisions regarding our daughter’s health care by playing on our fears of financial devastation. They have not only been belligerent with us but with Kennedy’s health care providers including her oncologists, the health care administrators of our hospital, her therapists, the medical billing specialist in the clinic and most anyone they come in contact with. They refuse to answer questions regarding her healthcare coverage and will not assist us in getting her any benefits.

Can you believe any of this? And we are paying $300/month for this crap!!! Well, I have had it. I have composed a letter and am sending it to the following people: our state senators, my state representative, my local senator and representatives in Salem, the governor of Oregon, former Oregon governor, John Kitzhaber who is working on healthcare reform, the protocol chair at COG, the Better Business Bureau of Charlotte, North Carolina where they are located, the chairman and CEO of PPC, our advocate at Sunbelt Rentals and those at Sunbelt who make insurance decisions, Robbin’s supervisor, the local papers and news channels, and the Oregon Insurance Division. We have already filed a complaint with the BBB of Charlotte and found out that PPC already has had complaints filed because of failures to honor their contracts and have an unsatisfactory standing with their local BBB. We are filing a formal complaint with the Insurance Division and a national patient advocacy group. Many of Kennedy’s providers who have had the unpleasant experience of dealing with Robbin are more than willing to be witnesses to how they and we have been treated. I guess they had to tick me off one more time. The final straw? Radiation/Oncology called them for the pre-authorization and they denied it on the spot. Robbin asked for the protocol (which is property of COG and confidential) and was denied and that is when things got ugly. R/O was absolutely floored that they would not pay for treatment for a 5 year old child!!! We then showed up at the clinic and found that Robbin calls them frequently requesting information even though they will not pay for it and then gets mad when she doesn’t get what she wants to hear. Who is this woman? Can someone in North Carolina find her and pull that 2×4 out of her rear? She would be so much more comfortable and might have an ounce of compassion after that!!

So, now I am sending letters and putting together our appeal. We did find out that if they deny our appeal (and I’m sure they will!) then we have “the right to bring legal action under federal law” (their words!). They should plan that we will be doing that. At the very least they should pay their portion based on the “out of plan” charges, right?

Ok, now for Kennedy. Thursday was not the funnest day we’ve had for sure. At around 1am she woke up just screaming her head off. I mean, she even woke her father! That is a miracle since I’m sure the guy could sleep through a freight train roaring through our bedroom! She just screamed and complained that her side was hurting. Thankfully, it was not the side where her liver is but the area that would indicate that she was very constipated. She filled two diapers but just could not get comfortable and tossed and turned, groaning for another hour and a half. I know her stomach is bloated from the steroids but I just could not help but worry after the VOD thing. I called Dr. McGann and woke her up. I felt horrible but as usual she assured me it was fine (is it really or do they just say that to make us feel better?) and sent us to the ER. Lucky for Kennedy, she has quite the entourage and Megan and Torey came to the rescue to do her port access and nurse Jody came for the deaccess. She then slept (minus the x-ray of her abdomen) and was fine. They let us go home around 8:30 am and I was exhausted! Grammie stayed home so I could try and sleep and to help with the kids. That evening however, Kennedy had a dark, tarry, sticky diaper and that can be a sign of internal bleeding so back to the hospital we went with poopy diaper in tow. This time we were admitted to the 3rd floor (and under the charge of Lyndsee-another favorite nurse) and were expected to stay all night. However, the diaper tested negative for blood and despite a low grade fever, they gave her anti-biotics and sent us home. We were returning Friday so there was little to worry about.

Friday we made it to R/O at 11am only to find they were running late and we were not seen until 12:30. Not usually a problem except that my coming off of steroids monster had not eaten or drank anything since 2am!! She had to be sedated for her procedures and man was she ticked! They finally got her in and sedated. They made her a mask to hold her head still and ran a radiation simulation to get an exact target field for next week. They had to take her earrings out (she has insisted we could take them out for almost 2 years!) and put them in before she woke up and so we decided that next week we are changing to a different pair. Big excitement in the Duval/Platts house! They then let her wake up a little but then sedated her again for the CAT scan. It was about an 1-2 hours total and boy, was Austin bored out of his mind. He did great entertaining himself with the wheelchair but he was bored. We had lunch in the Heartbeat Cafe and ventured up to clinic. Kennedy was accessed so we just did vitals and a quick counts check. She looked great and her counts are starting to recover so we expect it to be a go next week. Monday she will have a final counts check and her platelets need to be 75 (they were 51 Friday) and her ANC needs to be 750 (it was 360 and recovering on Friday). If she fails, we do nothing for a week and try again. If it is a go, Tuesday we will need to be there around 6am for radiation, then to Day Treatment to start her Cyclophosphamide hydration (2 hours pre-1 hour run-3 hours post), she’ll get her LP with Methotrexate, her monthly Pentamadine (antibiotic to prevent a very common form of pneumonia for chemo kids) and her first day of Ara-C. It will be a very long day especially because Austin has his first baseball practice that night! Go Austin!!!

Well, I should head for bed. Thank you to everyone for the encouraging e-mails and posts to the guestbook and journal. All of your support means worlds to us here on the frontlines. You all make it possible for us fight the good fight!

You may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you. ~Walt Disney

It’s not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant

Faith-Hope-Courage,
Mel

2 responses to “I Finally Got Mad Enough!”

  1. aprilb says:

    Mel,

    WAY TO GO! You let PPC have it! I have been apalled and disgusted as I’ve read about all they’ve pulled with you and Kennedy! I actually want to scream and yell tons of very bad words about them! I tried to e-mail you earlier and say have EVERYONE you know call, write and complain to PPC…tell them what JERKS they are! But your plan is much, much better. I hope they are put in their place and justice is brought about. This is really mean I know, but I’d like to see ALL of them have a child go through half of what Kennedy has and have to deal will an abusive, disgusting, heartless, full of crap insurance company too! Especially this Robbin lady…who the h_ _ l does she think she is?!?! Oh, Mel, I could go on and on and on! I’m so upset at what you are having to deal with! I wish I could do something to help! I just can’t think of anything except prayers and more prayers. You are doing such an awesome job…I know you struggle etc, but you are doing great. I’m sorry Kennedy has to do radiation. I just pray her little brain will be protected. Mel, is there anything you need or anything I can do to help you all? Just remember ALL the good, loving helpful, caring people you’ve met since Kennedy’s been sick and realize they outnumber these b_ _ _ _ _ ds in NC…the insurance creeps!

    LOVE,
    april

  2. derskine says:

    Hello, I periodically check Kennedy’s webpage –I was directed here through Rebekah’s Page. I wanted to say that I’m continuing to pray for Kennedy. Also, I am so totally appalled at what you have experienced with your insurance company. You have enough to deal with without having to worry about Kennedy’s medical coverage. I applaud you for contacting all the officials and will pray that somewhere, someone will be able to get everything straightened out for you! Primarily, know that God is on Kennedy’s side and I trust that He will be her best advocate in all areas of her life. …praying for you all daily!
    Deb in Greenville, PA

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